Spectacular Ukulele

Blood Tests Were Bad Enough To Look For More

I am in pain writing this but hyped up from my day out despite feeling like I am half dead but what do you expect, I had a doctors appointment, a blood test, a walk to the x-ray for a liver ultrasound only to find I have to fast for it on Tuesday.  I found out that some people can be fully subsidised for an osteoporosis check there under certain conditions and she seemed to think that years of cortisone use may be one of them.  I will have to remember to ask about that next Thursday when I go back to Dr Fleur Thomas again for the results.

Getting on with the most activity I have done (against my better judgement) since...I can't remember.......I then had to head to Medicare to get money to buy tobacco because no I did not ask for a nicotine script.  There was enough going on. And then I decided to buy a long dress that I will be wearing as a nightie around the house which is very elegant for $15.  I felt terrible in the dressing cubicle but I was too hyped up and determined to buy something nice for myself once this year!  I do not remember the last clothes I bought - probably an op shop.

Back to the bloodtests from 2 weeks ago, I finally got the results and there are several things elevated above normal:  White cells, lymphocytes, Gamma G.T. and ESR.  Only the ESR has improved over the blood test before that but it is still elevated. The low one is Urea and there are quite a few close to borderline but considered normal including the electrolytes sodium and potassium.  If it means anything to you, my cholesterol was 6.7 and triglycerides 2.4 mmol/L.


Just pray it isn't lymphoma and that it isn't liver disease because I'd rather have the congestive heart failure that an elevated GGT can indicate when it does not indicate alcoholism.  But I guess they don't know about the congestive heart failure because they are specifically looking at the liver hence the fasting ultrasound next week.  That pain in my right side that has come back since the bowel attack but it is nowhere near my liver but I did record upper right pain a few days on some records I was keeping for my cfids selfhelp course - there is a lot of charting and recording and target setting.  It is all probably no big deal because it can be a "reactive" liver problem - reacting to my virus she still says is indicated by the ESR.  She also says my lungs are much clearer but they have hardly been a problem except for still coughing up phlegm.  I never did get a heavy chest.

Elevated GGT means:

Elevated GGT levels may indicate that something is damaging the liver but not specifically what. In general, the higher the level the greater the "insult" to the liver. Elevated levels may be due to liver disease, but they may also be due to other conditions, such as congestive heart failure and alcohol consumption. A high GGT level would help rule out the cause of an increased ALP as a bone disorder. 

I know for sure it is not a problem with alcohol consumption

Low Urea

Low urea levels are not common and are not usually a cause for concern. They can be seen in severe liver disease or malnutrition but are not used to diagnose or monitor these conditions. Low urea can be caused by excessive alcohol consumption. Overhydration from intravenous fluids can result in a low BUN (blood urea nitrogen) . Normal changes in renal bloodflow during pregnancy will also lower BUN.

 Elevated White Cell Count

 A white blood cell count is high when leukocytes (white blood cells) are helping your body to fight an infection in your body because there are more disease fighting cells in your body. A high white blood cell count is also called leukocytosis. But It is important to be aware that a high white blood cell count does not identify a specific problem...but apart from the obvious, I also found this "The study shows that WBC counts over 6.7 x10⁹/L are linked with an increased risk of heart attacks, strokes, and death in older women"


Lymphocytosis (as stated on pathology report hence the follow-up Lymphocyte surface-marker studies I get the results for tomorrow)

Apart from CLL leukemias, lymphomas and stuff like that, glandular fever would be the most obvious cause for me because that is what I feel like - even got those dark circles under my eyes but it can be from human acute CMV infection and I bet also XMRV.

ESR elevated






The man
omgosh, he is off to view a share apartment with two girls in Maroochydore (the CBD of the Sunshine Coast is where he wants to be).  No wonder he is in such eustress.  Yes, that is what has changed about him over the last couple of years.  He used to be distressed but now he is eustressed and both cause him brain scatter just like his Mum.  Today is the kinda day he'll lose his wallet.  He's been complaining he can't get organized.

Health Report, Rheumatologist and Office in a Car

I feel better today

I don't know whether it was my experiment or not but I have been having really bad balance problems and wondering if I was going to faint and I have heard others talk about POTS and OI and my bloodtest included a repeat electrolyte study so I had electrolytes on my mind.  I have done a 24 hour intensive on gatorade, and salt instead of drinking so much water trying to avoid repeat constipation.  Today I feel a bit light-headed but I am not scared of it so I feel happy today.  My glands are still sore and my throat and I ache but I feel better.

I also went to the rheumatologist again today and I am happy that he has not quit on me and is going to try a few things.  I have some neck stuff going on in the x-ray but he said it wasn't too bad for a 55 year old neck.  He more or less suggested I should be checked for osteoporosis so I must remember that if he doesn't actually do anything about it.  I took him my lung xray too and he pointed out a few skeletal things that might indicate that and he is interested in the Crohn's too.  I won't go into any more detail about our plans but I am putting off LDN until he has seen the literature and we do the other things that cannot be done in conjunction with it.  It is all trial and error right now but at least he is trying and I am grateful for that.

He thinks I should take iron but didn't write a script for it but he said it was low end of normal.  He had also taken the trouble to write to the RBWHospital to get the reports from there and he would have if I had a gastroenterologist but I said I see a different one every time I go to hospital.  I don't mind paying this guy but he is still a bit hard to convince that there is more going on than fibromyalgia and chronic fatigue syndrome.  I had to tell him that my pain was not just muscular but he is so demanding in his descriptions of pain and I am so vague.  However he said the burning feet I had to put frozen chips on is a sign of neuropathy.  He is just not convinced any inflammation is going on yet and if there is he will call the Crohn's to question rather than any other autoimmune disease even though Aunty Dawn has Shogren's.

I also wonder if Nana's blacking out was some form of orthostatic intolerance but I did not talk about that with him.

Tomorrow I go to the regular GP in relation to the blood tests and these glands.

Number One Son

I didn't write sooner because I couldn't do much of anything except quick things on the computer.  My feeling faint stopped that. And I have had some very low bottom diastolic blood pressure readings and high heart rates doing next to nothing.  Anyway, I did not got around to tell you about Scott staying here on the weekend.  He left again on Monday to start work "out of his office - his car" for the Real Estate Agent in Nambour - or rather business broker.  He likes that title enough to work for nothing.  It would be nice if he got a sale.

He turned up yesterday too at about 4pm and said what do you want to do about Australia Day - I said we could have a BBQ if he wanted but then he said no and after he had a shower (or did he?) he left again saying he didn't want to stay.

This afternoon he was here sound asleep when I got back from Dr. Herd and he has still been sleeping in the car but at least he has finally put his name on the housing list even though he admits he does not want to live in public housing.  They said they would look for emergency accomodation since he was living out of his car so he said.  He is sleeping here tonight and I was well enough (or on an adrenaline high enough) to make a ham and salad tea for both of us while he went out to check a property or business for listing.  I asked no more questions about that.  He just says he has a very busy day tomorrow.

Yesterday I was still pretty wonky but by the afternoon I was feeling confident enough to check out the beach front roads to see what was happening for Australia Day.  It was packed - even Bribie Island with beach shelters lined up over there too.  I found a park and went for a dip.  It was a lovely day and I walked ever so slowly and carefully but it is my first swim for the year!  Make that the entire Summer so far!  I was tired - been extremely tired - but I am glad I saw the world.

Wish me luck I started all by myself

 

I got my blood test done before I started.  I am interested to find out if I still have inflammatory markers eg ESR after the Doxycycline repeat and I did not want it interfered with by the LDN.   If I need a repeat blood test only then will it show the effects (if any) from LDN.

Sleep Problems?

Try L-Tryptophan, 5HTP or Melatonin - all natural supplements.  I started with 5HTP about 5 days ago but it is hard to measure the quality of my sleep activities eg restless legs when no-one is there to observe them but it works for others.  More information

He's here again

Been sleeping in the car and his computer is broken down so he cannot take the no-commission job next week unless he borrows my EeePC but I still say no.  He's washing and using the eeePC here, after that....I don't know what he wants next.

I'm still sick - had a rush toilet experience early this morning X3 and I'm exhausted.  Haven't left the house since last time he was here - not even to give Karla a ride to her broken down car.

He's gone again now - running around trying to organize his life, wanted $20 to wash my car but it is not payday till 2morro for me, ringing places using my phone for emergency accomodation, will not go help with floods now he has a no-retainer job lined up in Nambour for next week, I said he could stay the night but he does not want to, has no intention of getting the bed back unless I organize a truck, and now I find this on Facebook:

Roxy 18 January at 12:47 Report

Hi Judy. I just had Sct turn up at my work. He said he is living in his car, and you and his dad and Brett won't talk to him and he needs somewhere to stay and help. There is nothing i can do for him. Is he ok? 

 

 

 

 

Guess where this is?

A drop of Lugol's Iodine a day for me

Lugol's Iodine has the correct ratio of iodine/iodide recommended by Dr.Abrahams for correcting iodine deficiency.

"We are just beginning to rediscover the amazing curative powers of iodine. While it may not be the panacea that old-timers have claimed it to be when used alone, when combined with magnesium chloride, ALA, and in the special case of cancer, with sodium bicarbonate, we will find something quite extraordinary. Survival Medicine for the 21st Century contains a revolutionary protocol for breast cancer that includes magnesium chloride, iodine and sodium bicarbonate. These three emergency room medicines when combined and used correctly will revolutionize the field of oncology but will threaten the pharmaceutical industry whose profits will suffer enormously from the widespread use of these inexpensive, safe and effective nutritional medicines." Read More


I'm going to flush these sore glands out for a week or three.  I started last night.  I bet it works on oral thrush too.  I have magnesium oil to rub into muscles to be absorbed that way and who hasn't got bi-carb in the cupboard? (but fruit tingles are nicer).


Anyway, grab some if you can because like everything else that works, it is soon to be banned for sale supposedly because it can be used in the manufacture of amphetamines.


Found this interesting too - The Spit Test


"At the start of the Ultimate Cleanse do the Spit Test to see if you have a systemic fungus problem. If the test is positive, this shows that you need to be much more vigilant with your program. A simple Saliva Test for Candida is as follows:
Immediately after rising before you eat or drink anything fill a clear glass with water at room temperature. Spit some saliva into the glass of water. Then check from time to time for up to an hour to see what happens to the spit. If Candida is present, you will see one of three things, or a combination of these.

1. There may be strings like legs extending down into the water from the saliva floating on top
2. Cloudy saliva will accumulate at the bottom of the glass
3. Cloudy bits will remain suspended in the water.

The quicker and stronger the strings grow and the sooner the saliva sinks, the more Candida is in the sample. If there are no strings and the saliva is still floating after one hour, you probably do not have systemic Candida but may still have a localized problem in the intestines or the vagina, and you may still have dysbiosis and infestations of other pathogenic microbes.

Even after systemic Candidiasis has been eliminated the spit test may still remain positive because of fungi living within the mucous membranes of the mouth which may then regrow in the night. This may be eliminated by repeatedly swishing MMS for several minutes in the mouth. Alternatively you may try swishing Lugol's before swallowing, or diluted hydrogen peroxide or diluted sodium bicarbonate, the last two best before going to bed. At other times it is also good occasionally to keep culture of lactobacteria in the mouth or ingest lactic acid fermented food."

Read More 

and it seems chlorine in drinking water displaces iodine "drinking water that is harmful to the body not because of its harmful germ content but because the chlorine content now causes the body to lose the much-needed iodine..." 

Read More


For Linda
It appears that iodine deficiency is a risk factor for both breast cancer and fibrocystic breast disease. Fibrocystic disease often reverses with sufficient iodine replacement. Iodine is also very effective at eliminating ovarian cysts. It works for fibrocystic breast disease and ovarian cysts because of its effect on estrogens. It actually helps metabolise estrone (an estrogen which promotes breast cancer cell growth) and its dangerous metabolite 16-alpha-hydroxyoestrone to estriol which is an anti-carcinogenic estrogen.
Read More 

Another Test

Another simple and inexpensive way to test is an iodine skin patch test. This test may indicate if an iodine deficiency exists however it not considered as accurate as the iodine loaded urine test. It involves painting a 5 by 5 cm patch of iodine tincture onto your inner arm or thigh. If the stain remains or only slightly lightens after 24 hours then your levels are considered normal. If the stain disappears, or almost disappears, in under 24 hours then there is a possibility you are deficient, if it disappears, or nearly disappears, under 10 hours then are likely to be deficient and should consider supplementation.

Some practitioners recommend to re-test using the skin patch test every 2 weeks to determine when your iodine dose can be reduced.

Read More

Floods in Gympie where Breville lives

Rattler keeps flood-split Gympie connected

By Jodie van de Wetering

As floodwaters from the swollen Mary River continue to bisect the southeast Queensland city of Gympie, residents and supplies are getting from one side of town to the other thanks to a vintage rail motor.

The Mary Valley Heritage Railway is best known for the Valley Rattler, a stream train which winds its way through the hinterland west of Gympie.

But the group's vice president Peter Alder says when the roads go out in Gympie, the train steps in.

"It's part of the flood plan here, when the river rises enough that road access to the Monkland side of town is cut, we start running a shuttle service with our rail motor."

The shuttle service has been running since Monday morning, and so far about 1,200 rides have been taken - that's 600 people taking a return journey. Mr Alder says they are also transporting supplies from bread and milk to medication.
Many of their customers are workers who cannot get to their workplace by road, although they have also carried emergency services workers, people travelling to help flood-stricken friends and relatives, and people making mercy missions to feed stranded animals.

Read More

The CBD will re-open next week

My Camping Grounds at Imbil

Into the Mary, the Yabba Creek flows and on to Gympie to flood its CBD.  Jan used to walk up to the bridge from within the Island Reach Caravan Park to get to town.

No Power or phones for a week

And on to Maryborough

From Gympie, the flood water in the Mary River moved on to flood Maryborough and you remember Maryborough.  We got lost in Maryborough looking for a lagoon that Mum wanted to find.  I remember Maryborough best for the MacDonalds breakfast and badly needed toilet.  Not to mention the markets downtown causing barricaded streets and the stupid search for cheaper petrol. 

 

 

This is Theodore

A Central Queensland town I camped in after leaving Cracow in April 2007.  It is one of the few places where campers can get gas and a supermarket without going all the way to Moura. Theodore is on the Burnett River but this is a suburban street and the whole town was evacuated and only just moving back.

Chinchilla

Here we have Chinchilla underwater

Last year we lost Australian topsoil from the

wind, not the water

From Toowoomba to Withcott to Grantham to all the Lockyer Valley then Ipswich and on to Brisbane via the Wivenhoe Dam the water went.

The waters recede in Brisbane today and the bullshark swimming in the streets of Goodna is not to be found.  The more usual sights in our area are those of swimming snakes trying to find higher ground/trees/posts.

Many people are leaving evacuation centres to go back home to cleanup today.  It seems Goodiwindi's levy will protect the town because the worst is over there too.  But now Great Western Victoria has to deal with flooding.  It all started with Rockhampton and Emerald.

Linda Should be told about LDN

Chapter 23 is the one to listen to.

Listen to internet radio with Joseph Wouk on Blog Talk Radio

He's gone again

Glad I paid him to do the floors.

He's back

Google LDN ! - Chapter 1. "Your watch is on too tight"

Google LDN ! - Chapter 1. "Your watch is on too tight"

CFS Patients at risk of developing Lymphoma

Crikey, if it is already in my family genetics then tell them to keep an eye on me with ME

http://niceguidelines.blogspot.com/2011/01/cfs-subjects-have-shortened-life-span.html

CFS subjects are known to have a shortened life-span and are at risk for developing lymphoma. Currently, there is no diagnostic test and no treatment, except for the specific treatment of microbial infections in those cases in which microbial agents can be identified (Devanur and Kerr. 2006. J Clin Virol 37(3): 139-150). Although the precise pathogenesis of CFS is unknown, a range of factors have been shown to contribute (Komaroff and Buchwald. 1998. Annu Rev Med 49:1-13; Devanur and Kerr. 2006. supra).

 http://cancerres.aacrjournals.org/content/52/19_Supplement/5516s

This report describes an initial analysis of population-based cancer incidence data in Nevada, focusing on the patterns of non-Hodgkin's lymphoma prior to and subsequent to well described, documented outbreaks of chronic fatigue syndrome during 1984–1986. 

http://www.oslersweb.com/blog.htm?post=606928
Number of years since University of Pittsburgh Cancer Institute director and “CFS” cancer cluster investigator Seymour Grufferman was refused funding by NIH to pursue the relationship between cancer and “CFS” and left the field: 17 years

http://www.meassociation.org.uk/?p=748

....... a report on the research published in The Wall Street Journal states that 20/101 people in the CFS group also had a lymphoma, a type of cancer affecting the lymph nodes. 

Toowoomba Inland Instant Tsunami Yesterday

This street was the focus of our lives.  The Muffler Shop was our bread and butter and I got engaged and turned 21 here as well.  The kids spent a lot of time here in the workshop (getting filthy).

 

Wondering about Helen in Withcott where the children are still stuck inside the child-care centre from yesterday before the parents could get in to pick them up.  Update: Belinda just let me know Helen is OK but it has been scary.  Roger told B that she had to be evacuated and may not even know how her house fared but she was on the higher end of the street.

It is still storming here after a lull overnight.  This morning I had at least 4 inches in the outside bucket and there are a few places in my yard where I could have a bath.  And there is another sink hole - a metre and a half deep on the nature strip over the road from me.  This house is always shifting and cracking and I guess rain like this is not going to help.

I guess B and S and Cohen are well and truly stuck in their house.  They have no money till Wednesday to stock up on food - but bread had already run out 2 days ago and it has just been reported that there is no bread, milk or eggs left in Gympie.  They will have missed out on the supplies by the time they get paid tomorrow and they have run out of basics at home.  B's CT scan was cancelled yesterday because none of the workers could even get to work and Roger has been cut off from anywhere for days now even before Gympie was threatened.  B has been not feeling right in his lungs but he says it's alright.  Once again he had 2 conflicting doctor reports.  One said he was fine to work after he got more pains and the latest one said his lung was still leaking air hence the need for a CT scan. I just told B to fill up some water bottles in case the water treatment plant becomes contaminated - it is easy to feel like it is happening to everyone else and therefore not take precautions but there is nothing to stop power outages like has happened to Roger who lost hundreds of dollars worth of food and cannot get out past the creek at the entrance of his mansion.

S turned up to get his bed yesterday with Jeff and it was just starting to storm again so the whole bed was wrapped in a tarp.  It looked like hail may be coming but there was not any.  It is still storming here today after a lull last night but even if I needed to I would be too ill to help myself much.  Just clearing the storm water drain on the street has left me shaking and I do not know why I am not getting better.  Pelican Waters has had quite a few streets including the main boulevard closed as of yesterday but it may well have subsided but I doubt I am cut off from the shops.

Bowel Attack

I had the most cruel attack early this morning - I thought I may pass out with the pain and I thought I was going to vomit too.  It was a partial bowel obstruction.  omg I hope I do not die like that - flaked out on a horrendously stinky toilet.

If I think the pain is bad now - it's not compared to that - my gut is still very sore and I guess it may be very bruised over the next couple of days after spasms like that.  I am not even sure it is over.  But if it was brought on by the constipation (I knew I was getting that way from the codeine on top of taking the Doxycyline) at least the diarrhea is getting through so I am not blocked any more - just prone to spasm.


I have to repeat how bad it was.  I am glad it does not happen very often since menopause.  I was groaning pretty loud but obviously not as loud as when I scream in my sleep.  Once again it brought back the memory of me sitting on the toilet with the door open at Boundary St looking straight into the darkened bedroom doorway where Roger was peacefully sleeping or mumbling "It'll pass, you've done it before."  Back then, there was a long delay between spasms and productivity (if you know what I mean) and that was even crueler.  Today that "labour period" was relatively short so something to be thankful for.

Inflammation has been a constant with me (except at the rheumatologist because I don't have rheumatoid factor)

Some illustrations of published evidence of inflammation in ME/CFS patients include the following:

1955
In this outbreak of ME in Adelaide, Australia, an agent was repeatedly transmitted to monkeys; when the monkeys were killed, microscopically, infiltration of nerve roots with lymphocytes and mononuclear cells was seen and some of the nerve fibres showed patchy damage in the myelin sheaths and axon swellings consistent with neurological involvement. In these monkeys, there were widespread changes involving the dorsal root ganglia, cervical and lumbar nerve roots and peripheral nerves. Perivascular collars of
lymphocytes and plasma cells were in the cerebral cortex, brainstem and cerebellum, spinal cord and around blood vessels to nerve roots (Pellew RAA, Miles JAR; Med J Aust:1955:2:13:480-482, cited by J Gordon Parish; Postgraduate Medical Journal 1978:54:711-717).
This is particularly significant, given the autopsy evidence presented at the Royal Society of Medicine meeting in the series “Medicine and me” on 11th July 2009 by Dr Abhijit Chaudhuri, where he showed slides of
inflammation of the dorsal root ganglia in three ME/CFS patients.

1970
Innes reported isolation of Coxsackie B2 virus from the cerebrospinal fluid: “The isolation of an enterovirus from the cerebrospinal fluid in the fourth month is in itself remarkable” (Innes SGB; Lancet:1970:969-971).


1992
“Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system” (Buchwald, Cheney, Peterson D, Komaroff, Gallo et al; Ann Int Med: 1992:116:103-113).

1994
“As with any chronic inflammatory condition affecting the central nervous system, the T2-bright foci on MRI in (ME)CFS may represent a perivascular cellular infiltrate and/or reactive demyelination of the surrounding white matter. Alternatively, these abnormalities may reflect the results of a vasculopathy specifically involving the small vessels of the cerebral white matter. Specifically, on the basis of our observations, the white matter abnormalities seen on MRI images may represent foci of gliosis or chronic demyelination, which appear to be irreversible” (Schwartz RE et al; Am J Roentgenology:1994:162:935-941).

1997
“It is now evident that this illness is not simply an imaginary one, nor the result of anxiously amplifying normal bodily sensations. Substantial objective evidence of abnormalities in the central nervous system is now available. Magnetic resonance imaging has revealed punctate areas of high signal in the white matter more often in patients with (ME)CFS than in healthy controls. They may represent areas of inflammation or demyelination” (Komaroff AL. JAMA:1997:278:14:1179-1184).

2004
“These findings are consistent with an activated inflammatory response. Shockingly, the mean QOL (quality of life) scores as regards limitations on physical functioning were very, very low, similar to those found in people with AIDS and multiple sclerosis” (Advances in biomedical understanding of ME. Neil Abbot. Vance Spence. InterAction May 2004).

2006
“(ME)CFS is a poorly defined medical condition which involves inflammatory and immune activation. The Type I interferon antiviral pathway has been repeatedly shown to be activated in the most afflicted patients. An abnormal truncated form of ribonuclease L (37-kDa RNase L) is also found in (ME)CFS patients and this protein has been proposed as a biological marker for (ME)CFS. The levels of this abnormal protein have been significantly correlated to the extent of inflammatory symptoms displayed by (ME)CFS patients. (Our) results suggest that chronic inflammation due to excess nitric oxide plays a role in (ME)CFS and that the normal resolution of the inflammatory process is impaired” (M Fremont, K De Meirleir et al. JCFS 2006:13(4):17-28).

2007
“A number of symptoms of CFS are linked to inflammatory processes….CFS has been found to be associated with increased immune activation and inflammatory cytokine levels….Our expanded understanding of the genomics of (ME)CFS has reinforced the evidence that the illness is rooted in a biologic pathogenesis that involves cellular dysfunction and interactions between the physiologic stress response and inflammation” (Nancy G Klimas and Anne O’Brien Koneru; Curr Rheumatol Rep 2007:9:6:482-487).

2008
In a personal communication, Nancy Klimas, Professor of Medicine at the University of Miami, world-renowned immunologist and expert on ME/CFS, said that 80% of all ME/CFS patients (both severely and not so severely ill) do have evidence of inflammation if the correct scans are employed, and she believes that 100% of ME/CFS patients actually have inflammation.

2008
On 17th December 2008 Emory University School of Medicine issued a press release by Kathi Baker: “A new study conducted by researchers from Emory University and the Centres for Disease Control and Prevention (CDC) shows that individuals with (ME)CFS have increased blood levels of the inflammatory chemicals known to increase risk for developing illnesses ranging from cardiovascular disease and dementia to diabetes and cancer. ‘We don’t know where the increased inflammation is coming from in patients with (ME)CFS symptoms in our study, and although depression has been associated with increased inflammation, in our study it did not account for the increased inflammation in individuals with (ME)CFS’ (explained Dr Charles L Raison). The researchers found that subjects with (ME)CFS had higher levels of CRP (c-reactive protein) than did well individuals and also had higher scores on an inflammatory factor that included both CRP and white blood cell levels”.

2009
In the study to which the above press release relates, the authors stated: “The current study examined plasma concentrations of high-sensitivity c-reactive protein (hs-CRP), white blood cell count (WBC) and a combined inflammation factor in a large (457) population-based sample. Log-transformed mean plasma concentrations of hs-CRP were increased in subjects with (ME)CFS when compared to subjects who were well” (Charles L Raison et al; Brain, Behaviour and Immunity 2009:23:3:327-337).

2009
Professor M Maes from Belgium reviewed recent findings on inflammatory and oxidative and nitrosative stress pathways and reported: “The ‘psychosomatic’ symptoms experienced by (ME/CFS patients are caused by intracellular inflammation. Symptoms occurring in (ME)CFS have a genuine organic cause, that is activation of peripheral and central IO and NS pathways and gut-derived inflammation” (Curr Opin Psychiatry 2009:22(1):75-83).

2009
Professors Mary Ann Fletcher and Nancy Klimas published yet more confirmatory evidence of immune dysfunction and inflammation in the maintenance of ME/CFS: “In this study, 10 of 16 cytokines examined showed good to fair promise as biomarkers. However, the cytokine changes observed are likely to be more indicative of immune activation and inflammation…Many of the symptoms are inflammatory in nature….
“Pro-inflammatory cytokines: A significant elevation in the relative amounts of 4 of 5 pro-inflammatory cytokines in peripheral blood plasma of patients with (ME)CFS was found when compared with the controls. In cases, lymphotoxin (LT)? was elevated by 257% and IL-6 by 100% over the controls.
“Anti-inflammatory cytokines: IL-3 was significantly lower in (ME)CFS patients.

“The probability of chronic inflammation in (ME)CFS patients is supported by the elevation of four members of the pro-inflammatory cytokine cascade, LT?, IL-1?, IL-1? and IL-6, in the (ME)CFS samples compared to controls.

“Interleukin-13, associated with inhibitory effects on inflammatory cytokine production, was lower in cases compared to controls.

“The results from this study support a TH2 shift, pro-inflammatory cytokine up-regulation and down-regulation of important mediators of cytotoxic cell function”. (Journal of Translational Medicine 2009:7:96:doi:10.1186/1479-5876-7-96)

2009
In her lecture in November 2009 at the University of Miami, Professor Nancy Klimas said about viruses and ME/CFS that much of the research at Miami and internationally found that the viruses studied all have several things in common: they infect cells of the immune system and the neurological system; they are capable of causing latent infections and they can reactivate under certain conditions.

 
She also said that their early work at Miami in the late 1980s (published in the Journal of Clinical Microbiology in 1989) showed that ME/CFS patients had immune activation and poor anti-viral cell function. She then went on to discuss the importance of the findings of the retrovirus XMRV (evidence of which was published in Science on 8th October 2009), saying that it was “very impressive work”. She continued: “This Science paper was amazing for a number of reasons. First, this team had put together such strong science that they could go for a Science paper. Science is like the Mecca of publication. If you get your stuff in Science, that’s the best place you could possibly (get it published). And they don’t take just anything and they sure, sure, sure don’t take anything unless it’s extremely well done, validated and tested out. So they took this paper – they not only took it, they put it in Science Express. They thought it was so important, they published on a very fast track…The way (the researchers at the Whittemore Peterson Institute) looked is very sophisticated…They then tried to find (the virus) in all these other ways…they looked from a whole different angle. Still found it. Backed up and looked from another angle. Still found it…they had five different kinds of ways they looked for this virus. And they were able to find the virus. That’s why Science was so impressed…It is a virus that can infect tissues that aren’t white blood cells…We’ve always thought something like that has to go on in (ME)CFS because you all have some neuro-inflammation. Your brain has a low grade level of inflammation.

And you have some inflammation in the tissues that make hormones, particularly in the hypothalamic-pituitary-axis. And this is a virus that infects that type of tissue…It’s pretty impressive that out of 101 (ME)CFS cases defined by clinical case definition or a research case definition that they found 99 with the virus…And, oh, by the way, we have a biomarker. Not a small deal. A biomarker – the virus itself. No betterbiomarker than something that’s clearly, tightly associated with an illness…So the conclusion, it really is a big thing. It’s a big thing…That work we were already doing plays right into this. All the genomics work and all the immunology work. This is all critical to the better understanding of this illness and how this virus plays into it” (with grateful acknowledgement to PANDORA and http://aboutmecfs.org/Rsrch/XMRVKlimas.aspx and http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx).

2010
On 19th September 2010 in a radio interview (South Florida Spotlite, interviewed by Ron St John), world expert in ME/CFS Professor Nancy Klimas (principal investigator of the National Institute for Health’s Centre for Multidisciplinary Studies of (ME)CFS Pathophysiology at the University of Miami) was clear: “…there is a chronic inflammation, neuro-inflammation, and it upsets the whole balance of your systems…the patients become terribly ill…. The immune system is really cranked up; it’s a tremendous amount of inflammation. I think that if doctors could get this in their heads that it’s sort of like lupus or one of these really inflammatory disorders…it is that level of inflammation. There’s a tremendous amount of inflammatory stuff going on, and there’s a lot of inflammation in the brain itself” (http://www.litemiami.com/spotlite/index.aspx)

Note on inflammation
Following an international meeting on inflammation held in Bordeaux, France, Robert Dantzer et al published a Review entitled “Identification and treatment of symptoms associated with inflammation in medically ill patients” (Psychoneuroendocrinology 2008:33:18-29). Given the documented evidence of inflammation in ME/CFS, this Review has important implications for people with the disorder. It recommends testing with a standard battery of inflammatory markers in medically ill patients. Quotations that might be relevant for people with ME/CFS include the following:

“This meeting brought together clinicians and basic scientists with a common interest in understanding inflammation and associated symptoms in medically ill patients (and it) focused on: (a) predominant symptoms associated with inflammation, (b) markers of inflammation at the periphery, (c) possible markers of brain inflammation associated with low-grade peripheral inflammation in humans, (d) animal models of inflammation-associated symptoms, and (e) domains of intervention for controlling inflammation-associated symptoms”.
“The diagnostic tools that are favoured by psychiatrists are clearly not the best ones. As pointed out by Joel Dimsdale (San Diego, CA), the concept of somatisation that is used for characterising symptoms in the absence of any detectable disease is of little operational value, if not misleading”.



~~~~~ Margaret Williams says that this information may be reposted. She also notes, “It may be instructive to consider how the information…has been so consistently ignored by the Wessely School during the 25 years of Professor Peter White’s celebrated ‘Fatigue Service’ and what impact – if any –this information will have on the PACE Trial results and on the Principal Investigators’ consequent recommendations for cognitive restructuring interventions.”

http://healthmattershow.com/symptoms-of-me-cfs-inflammation-and-more/

Doctor Fleur Again

And you know how much I hate going, but I had to go back because I ran out of antibiotics and I don't think they have quite finished doing their job which she agreed.  Throat and chest observations were improved she thought but because my tongue was sore I now also have Nilstat Oral for Thrush.

My ESR was 36 instead of 30 at the top end of normal so she is repeating the FBE, ESR and the liver one again mid-January to make sure I have cleared up by then.

I am still having bad sleeps - cannot stay in a deep sleep, my legs are flying around or jiggling or shaking, and no doubt I am talking a lot so I am very tired.  But hopefully this is the beginning of better health and less pain.  She said I had been sick for so long, it would take quite a while to get back to normal (whatever my normal is - I have nearly forgotten).

Rob is asking me if I am planning for a camping trip - he has no idea I cannot even think along those lines right now.

LDN links I want to keep in one place

http://www.ldndatabase.com/ourstory.html

http://ldnresearchtrust.podbean.com/category/fibromyalgia/

http://www.ldnresearchtrust.org/

http://www.lowdosenaltrexone.org/

http://www.ncbi.nlm.nih.gov/pubmed/17222320

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=87

http://www.ldninfo.org/ldn_trials.htm

http://ldn.proboards.com/index.cgi?board=forum

http://www.custommedicine.com.au/shop/products/Low-Dose-Naltrexone.html

http://www.ldnaware.org/

https://www.alldaychemist.com/415-naltima-50mg-.html

http://www.ehow.com/how_2343640_use-low-dose-naltrexone-autoimmune.html

https://www.riverpharmacy.ca/drug/naltrexone

http://www.ldners.org/resources.htm

http://www.ldnscience.org/

• LDN is rapidly metabolized and excreted from the body, within a few hours at most. Its beneficial effect in autoimmune disease is as result of it tricking the body into producing large amounts of OGF - which act as an immune suppressant/modulator. However, if the dose of LDN being used is too high, this making it naltrexone treatment rather than low dose naltrexone, it could definitely exacerbate the symptoms of autoimmune diseases. This is because the continuous presence of naltrexone will block production of OGF on a continuous basis. OGF is needed to keep the immune system in order.

• I dissolve naltrexone in 50ml of water to make LDN, is a filler involved in this process?

  A filler is a substance that is mixed with an active ingredient in order to enable tabletting or encapsulation of consistent quantities of active ingredient. If you are dissolving pure naltrexone, there would be no filler involved. However if you are dissolving naltrexone tablets or capsules, those may well contain fillers or binders. You should check the manufacturer's product insert.

• Should LDN be stopped before surgery?

  This question must be discussed with the anesthetist who will be aware of how much time before the surgery LDN should be stopped. You should ensure you make the anesthetist aware that you are using a low dose, and the exact dose being used.

• Will LDN interfere with Lomotil (an anti-diarrhea medication).

  Lomotil contains Diphenoxylate which is an opiate agonist. LDN will therefore prevent it from working for a short period of time which could last up to several hours, until the LDN is metabolized and excreted from the body.

• Can your body become accustomed to LDN's rebound effect?

  In theory the answer is yes, and therefore it may make sense if LDN is losing its effectiveness to take a break from using it every so often. This question has not yet been addressed in clinical trials.

• How soon after taking LDN can you take an opiate painkiller?

  It will take a few hours (with individual variation) for the LDN to be metabolized, and therefore enable the opiate to relieve pain. There is no harm in taking the painkiller sooner, except that it may not work. 

• Is LDN compatible with melatonin?

  At this time there is no known contraindication concerning LDN and melatonin. LDN can be taken at any time of the day, so if it disturbs sleep it would be wise to take in the morning.

• Is LDN compatible with Natalizumab?

  At this moment there are known interactions between LDN and natalizumab.

  ---

  Is there a preference for the filler used when preparing LDN?

  Yes, for two reasons. Certain fillers may interfere with rapid absorption of LDN. Additionally, some patients are intolerant of certain fillers. It has been reported that microcrystalline cellulose and dextrose are both compatible with LDN. However individual tolerance to these may vary in very sensitive individuals.

• Can LDN be taken twice a day?

  As mentioned elsewhere on this site, according to Dr. Zagon's studies the optimal daily dose of LDN is between 2.5 and 10mg. It is conceivable that some individuals, depending on their metabolism, would benefit from taking two doses daily of 3mg or 4.5mg, 12 hours apart, and in fact this has been reported by some people.

• Are there any contraindications for combining LDN with Tricyclic or SSRI, SNRI Antidepressants?

  At this time there are no known contraindications for this combination.

• How quickly can one expect to see benefit from LDN?

  Most users typically experience benefit within days. If no benefit has been seen by the end of one month, it may be necessary to modify the dose being taken. If the dose adjustment does not help, it is unlikely that benefit will be seen from LDN in such cases.

• Is it possible for LDN to raise blood pressure?

  This has not been reported previously. In fact endorphins are known to lower blood pressure and since LDN raises certain endorphin levels, one would if anything a regulation of blood pressure. If LDN does cause raised blood pressure, one should question whether the correct form of naltrexone has been used. It could be that a slow release form has been incorrectly used instead of an immediate release form. 

• Has LDN been used for diabetes?

  No studies have been carried out yet in diabetes, whether type 1 or type 2. However there have been physician reports of LDN's help in regulating blood sugar levels in diabetes.

• ---

   Is LDN an immuno-suppressive drug?LDN is best classified as an immuno-regulator. It causes an increase in OGF levels - and OGF regulates proliferation of all cells, including immune cells (T-cells and B-cells). When immune cells are being produced in excess (leading to autoimmune conditions), OGF acts to slow down their proliferation. Whilst this can be construed as immune-suppression, it is most accurately described as immune-regulation.

• Can LDN be used together with OGF?

  Research at present does not support taking the two together. Since LDN neutralizes the effect of OGF, it would not make sense to combine the two. However there are physicians who prescribe the two together, whilst advising a long distance (like 10 - 12 hours) between the two. Whether the results are better than taking OGF on its own remains to be clarified in a trial.

• ---

   Please discuss taking LDN and alcohol usage, wine, in particular.
  
  If wine is consumed at night, should LDN be taken in the morning? LDN does not interact with alcohol in any negative way. Whilst naltrexone is used to treat alcohol craving, there is no problem taking LDN after alcohol. LDN can be taken in the night or in the day as desired.
•  If a person takes LDN for 2-4 months and then stops, will the newly-formed opioid receptors remain, or will they go back to pre-LDN levels?
  
  The newly formed receptors will last a short time, probably days at most.  

• ---

  The benefit from LDN in MS has been reported to be cumulative, and the time it takes to achieve maximal benefit varies amongst individuals.

• Would LDN be indicated for other auto-immune disorders, such as lupus?

  Based on its mechanism of action, LDN could in theory work for any autoimmune disorder. There have been favorable reports of its usage in lupus, although no formal studies have been conducted.

• Can you take Prednisone (cortisone) while on LDN?

  At this time there is no research showing any problem in combining these medications.

• When will LDN be approved by the FDA to treat Multiple Sclerosis?

  Obtaining FDA approval is a costly process, often running into hundreds of millions of dollars. Where a drug's patent has expired, no incentive exists for a drug company to invest the funds needed to gain FDA approval. It is unlikely that LDN will ever gain FDA approval for multiple sclerosis unless charitable sponsorship is found to finance the process.  

  ---

Infectious Neuroimmuno-induced cardiomyopathy

is what I call it today.

I just made another appointment so see Dr Fleur tomorrow since I am still no better and I only have 1 antibiotic left.  I also want to quiz her about my ESR.

 

Nightmares

I thought she would be too deaf to hear by now but I got another report from Flora next door that I was screaming out the word "Scott" so loudly (but when I questioned her she said it could have been "stop") that she got up and checked out the front to see if there was an extra car and I was in trouble of some sort.  I do not remember anything as usual.  It is Summer and the window is open some but my bed is now on the opposite wall away from her wall.  If my sleep quality is so bad then no wonder I cannot shake these glands and aches.

Crappy New Year

Crappy New Year - woops I mean Happy

I'm sorry but I have not got any good news.  My New Year hopes were pinned on the Doxycycline working, assuming that it was a chest infection that had me feeling so flu-like and painful (more than usual).  The short story is that the glands in my neck and under my arms are really, really sore and I am also getting extra pains in the stomach.  This really feels like glandular fever and the pain is getting to me because nothing is working on it.  The pain, heat and redness on the soles of my feet has had me try putting my feet on frozen things.

I have been feeling kind of peculiar (which is not very informative) since taking those antibiotics and so I began to look up some of the side-effects.  The one that really is hard to fathom is the side-effect called "flu-like" symptoms.  I had flu-like symptoms to start with and now they tell me the side effects are flu-like symptoms so how am I supposed to judge that?

The only thing that has surprised me is that I have not had any diarrhea from this medication but I guess it eliminates the idea of a flare-up of micoplasma P. and even Lyme disease (the tick fever) is treated with this drug and since I feel no better maybe I can assume I have not got that either.  If it is glandular fever (again), then I am still not going to know for sure since the blood test didn't even include a check for EBV titers and we all know that antibiotics do not work on viruses.

So who is going to look after me while I convalesce?  You both know I had glandular fever for three months way back when so I expect that I am not going to be going camping for a while.  I cannot believe that I have had this thing creeping up on me since mid Nov and before my little visit to Gympie I was not that great either so I am starting to feel really sorry for myself.

I have nearly run out of toilet paper, and sugar and meat and veggies and fruit and.......on it goes so I am going to have to drag myself out to the local shops like it or not.

S has turned up twice, "felt bad vibes", and left again quickly - it seems he has returned Connor to his Mum already which makes a mockery of his statement that he had to have him for a week by order of the courts.  Yesterday's visit was only to collect my portable TV antenna but I refused to give it to him especially now that my main house antenna has for some unknown reason resulted in bad snowy pictures.  It seems he has no antenna socket in his bedroom at this share house and he is wanting to avoid sitting in the lounge room with everyone else to watch TV.  I don't want to try and predict what is going to happen there.  But what am I going to do if he comes back here especially now that I badly need a housekeeper?

If I do not get a phonecall from the doctors today, it will mean all my blood tests were clear and I will be left in this agony with no help once again.